'We're treated like drug addicts': As America fights opioid addiction, the healthcare system is failing people who live with chronic pain

There are 25 million people in the US living with chronic pain. Some turn to devices or non-opioid painkillers, others to yoga or meditation. But many have found relief only from opioid painkillers.

As the US opioid crisis escalates, those who suffer from chronic pain and take opioid-based painkillers are feeling pressure from new policies that limit prescriptions.

“They completely forgot about the people who have to live with chronic pain every day,” one patient told Business Insider.

At the same time, access to less addictive pain-management treatments remain out of reach for many as insurers ask their members try more addictive medications first.

Dominique Goodson says she would be happy to get off her opioid prescription.

A New Jersey resident, Goodson has sickle cell anemia, an inherited blood condition in which the body has a hard time producing healthy red blood cells, which carry oxygen around the body. It can cause intense pain. She has tried to cut her prescription before, and her doctors are now slowly lowering the dose of the long-acting painkiller.

“I would love to not be on opioids or any medication, period,” Goodson told Business Insider.

Goodson is one of the 25 million people in the US living with chronic pain. Some turn to devices or non-opioid painkillers, others to alternatives like yoga or meditation. But many have found relief only from opioid painkillers.

In 2017, the crisis gained national attention when President Donald Trump declared it a public-health emergency, escalating the attention and some of the funding that can go toward addressing the issue. It’s led to new legislation and policies aimed at limiting prescriptions and doses and increasing pressure on pain doctors, while hospitals and insurers are looking for ways to cut down on opioid misuse by limiting the number of pills they prescribe or authorise.

It’s also led to pain patients being caught in the middle.

Business Insider spoke with eight people who suffer from chronic pain stemming from a number of conditions, including sickle cell anemia, nerve pain, and debilitating migraines. All are facing the same daily pressure of worrying about what might happen if their doses get cut or denied altogether.

For those who have been on a high dose of opioid-based pain medication, lowering that dose or coming off – either by personal choice or because doctors are limited in what they can prescribe – can be painful. The body, which has become dependent on opioids, begins to go through withdrawal, an uncomfortable process that’s added to the chronic pain.

At the same time, patients and providers have found, when pain patients are prescribed less addictive treatments like methadone, those prescriptions are denied by the insurer. Instead, the patients are being asked to try more addictive medications like oxycodone first.

And as doctors and insurers pull in different directions, patients suffer.

“To be honest with you, if they take away any more pills from me, I will probably commit suicide,” Donna Kerger told Business Insider. Kerger is a Maryland resident who has been living with chronic pain after a throat surgery hit one of her nerves 18 years ago. Other pain patients Business Insider spoke with mentioned suicide as well, either as something they’d personally considered or experienced within the chronic pain community.

“I can’t handle the pain, and I definitely do not want to go through withdrawal the way these places handle it,” she said, referring to addiction treatment centres.

‘We’re treated like drug addicts.’ What life with chronic pain is like in 2018

Chronic pain is the blanket term for any kind of pain that lasts more than 12 weeks. Pain related to a surgery or an accident would be considered acute pain.

For the men and women Business Insider spoke with, the chronic pain came from conditions like diabetic neuropathy, a surgery that struck a nerve the wrong way, and the symptoms of sickle cell disease, an inherited blood disorder.

Goodson said the pain she feels from a sickle cell crisis can be enough to make her cancel plans. The pain from having a childbirth – her friends who also have sickle cell reassure her – is nothing compared to a crisis.

“Imagine someone hitting you with hammers but leaving no marks,” Goodson said.

The pain can be constant, keeping people in bed for much of the day. Being on an opioid isn’t so much about getting a feeling of euphoria or absolute pain relief. Instead, it almost helps shift the focus from the pain so that you don’t care as much. “It helps you psychologically deal with it,” Kerger said.

For many, being on a prescription opioid comes as a last resort.

“For me, I literally tried about 50 or 60 other treatments when you take into account other medications and surgical procedures and nerve blocks, and everything you could possibly think of,” Zachary, who says he’s been living with chronic pain for seven years and preferred not to give his full name, told Business Insider.

But for those on the medication, they view it as a game changer.

“I feel much more capable and confident when I have my medication,”

“I feel much more capable and confident when I have my medication.”

Zachary said.

Because of the volume of opioid misuse, chronic-pain patients looking to take an opioid have a lot of restrictions and rules to follow.

That includes signing contracts assuring that they will take the medication as prescribed, submitting to regular drug tests, background checks to be sure they aren’t getting a prescription from any other doctor, and maintain a relationship with one ER in the case of dire circumstances.

“We’re treated like drug addicts,” said Dave Cole, who has had chronic pain for more than 15 years stemming from diabetic neuropathy.

But for these people, misusing the drugs wouldn’t make much sense, they say.

“I have no desire to do that. I need the medicine next week and the week after,” Mark Zobrosky, who has been living with back pain for two decades, said.

Zobrosky – who has pain stemming from injuries and surgeries – said that to make sure he stays honest, he has his wife fill up his daily prescription so that he doesn’t have access to anymore.

One time his prescription was stolen at an airport. His doctor couldn’t give him anymore to make up for it. Zobrosky said he recalled his doctor telling him, “You’re going to be in a lot of pain for a while.”

Faking out your brain with spinal-cord stimulation

People living with chronic pain are facing increasing pressure in the growing opioid crisis. In 2017, opioids took the lives of more than 63,300 people, with many deaths attributed to fentanyl. And in 2016 there were more than 214,000 opioid prescriptions written in the US, fewer than prescribed in 2015.

Samantha Lee/Business Insider

Of course, there are ways to treat chronic pain that don’t involve opioids.

For one, there are other medications, like non-aspirin nonsteroidal anti-inflammatory drugs (NSAIDs), as well as injections like nerve-blockers and steroids.

Then there are non-medication-based treatments, such as operations and implants. Neuromodulation devices, for instance, like spinal-cord stimulation, send electrical signals to certain nerves in the body, creating interference that overrides the nerves from signalling pain to the brain.

“It just fakes your brain out so your brain thinks you’re not hurting as much as you are,” Zobrosky, who’s been using the implanted device for about eight years, said.

Zobrosky’s use of spinal-cord stimulation kept him from increasing his opioid dose, he said. But often, having access to these alternatives – or even less addictive or deadly forms of opioids – can be a challenge.

Fearing the doctor

Cole has experienced the challenge of getting access to non-opioid medication. Cole’s pain doctor is cutting back on his opioid dose. During that time, there were eight months when his new insurer wouldn’t give him Lyrica. Cole had been on the drug, which is used to treat nerve and muscle pain, for a few years before then. During those eight months, Cole said he had suicidal and lived in a state of high pain.

“I lived in constant fear of going to the doctor,” Cole said, explaining that he was worried the dosage would be cut back further. He turned to alternative treatments, such as infrared light therapy, yoga, acupuncture, and cannabidiol oil, which had varying degrees of success in helping. But it can get expensive, especially while living on $US1,600 a month.

Goodson’s been on opioids since 2008. In 2017, she started to have trouble getting her prescription. For two months, her doctors worked to get her a long-acting dose of oxycodone. Eventually, she was able to get the prescription.

Cole’s and Goodson’s experiences aren’t unique. Heather Gore, the CEO of the Orthopaedic and Spine Center, is dealing with insurers asking her doctors to put their patients on fentanyl before Butrans patches, which tend to be more expensive but are less addictive.

America’s Health Insurance Plans, which represents health insurance companies argues that abuse-deterrent formulations (ADFs) of opioids aren’t much of a solution to the opioid crisis.

“Any opioid comes with some form of risk for abuse or dependence. So, despite their name, there is very little evidence that ADFs actually fully protect chronic pain patients from abuse or illicit use of opioids,” AHIP communications director Cathryn Donaldson said in an emailed statement. “Also they are relatively new, cost prohibitive, and the evidence of efficacy is still limited. Health plans will continue to review the evidence base as it grows.”

Cutting back on dosage

While those suffering from chronic pain often struggle to access alternative treatments, they’re seeing their existing opioid dosages restricted.

Cole, for example, once took as much as 350 milligrams of an opioid painkiller a day. Now his doctors are working to cut him down to 120 milligrams. So far he’s managed to bring it down to 140 milligrams, but the restriction has taken its toll.

It means he can’t get out of bed as much; it means he can’t see his grandkids or children as often because he gets too angry because of the pain.

“Now, I’ve got them maybe once a month, maybe less than that. It’s because I’m in so much pain that I yell at them. I’m not going to just sit here and yell at my grandkids,” Cole said. “As much as I love to see them, I’m not going to sit there in pain.”

Cole said he used to be able to leave his bed and move around 40% of the day. Now, with the reductions in his dose, it’s closer to 10%.

“They completely forgot about the people who have to live with chronic pain every day,” Cole said. Ideally, he said, he thinks he could function with 165 milligrams daily.

Getting off the medication altogether can be daunting. For the past five years, Kerger has been looking for a rehabilitation center that could help her manage both the withdrawal symptoms and her nerve pain. So far, she hasn’t had much luck. Because she is on Medicare, rehab centres won’t admit her because it’s not covered. What is covered is a short hospital stay, which she said isn’t long enough.

Her doctor hasn’t decreased her dose, but the fear that it could be cut back has her concerned.

“I’m terrified,” she said.

Policy in the doctor’s office

Because prescription drugs have been integral to the opioid crisis, restrictions around the drugs have been part of the solution that policymakers and the healthcare industry have turned to.

But, Zachary said, the moves feel about five years too late. Instead, he said, the focus should turn to illegal opioids, including heroin and fentanyl, which have the deadliest consequences.

Instead of blanket policy decisions that cap prescription limits, most pain patients have a simple request for what they’d rather see happen for the opioid crisis: They want their relationship with their pain doctors left alone.

“The CDC shouldn’t be telling my doctor how much I need,” Cole said.

The hoops needed to jump through to have that relationship, like drug tests and routine checkups, are just fine.

“We do have accountability and we need to stick with that,” Zobrosky said.